Monday, February 11, 2013


For months now, my most constant feeling has been numb…nothing. It is what I wanted…the point I aimed to arrive at. Caring for Nami is heart-wrenching, painful, too much to bear. Our family has endured one blow after another. It got to the point that I was no longer able to handle any more blows and I wasn’t even surviving in survival-mode. I needed nothing-mode. That sounded nice…a place where I felt nothing. I worked on pushing feeling out of my head and my heart.

In the past few months there have been moments of such extreme anguish that I was unable to block it completely out. I crumbled to pieces when Nami was scheduled, then unscheduled for brain surgery. I scolded myself when I groaned and sobbed with the pain, “How could you let yourself get your hopes up!?! You know better than that! Don’t get your hopes up because when you do they always come crashing down. You know you can’t handle the agony!” Other moments of anguish were the multiple times in the last few months that Nami has been hospitalized due to uncontrollable seizures. When these medical emergencies arose, I felt extreme stress and grief, but then I tried to quickly bury these feelings.

I am unable to handle the pain I feel every time I watch my child seize, so I push it under. Nami seizes so many times a day. I want all of it gone. I just want numbness. I haven’t ever been a drinker of alcohol, but I've crave wine in hopes that it will calm me and make me feel numb. I have gained a new comprehension of why people abuse drugs. I have wanted drugs to mask the pain I feel. I have even wished for a meteor to strike my room so I would no longer have to feel this despair. I have been desperate to get away from it.

[Here is a link to neuropsychologist who talks a little about families of people with TSC. It is a few minutes long but goes into some explanations the hardships on the family and why. How Physicians Can Support the Family ]

After a while, I got quite successful at not feeling. I often went through the motions of my day, not realizing how I got from point A to point B. I got to the point where I talked about Nami’s 100+ seizures day after day after day without feeling. I got to the point that I was no longer able to cry. I consciously knew that what I endured at particular moments should be bringing me to tears, yet I sometimes just sat for hours in front of the television feeling nothing. I wasn’t even aware of what I was watching. I just knew I didn’t feel and that is what I wanted.

What I didn’t realize is that pushing feelings away resulted in numbness from extreme sadness AND happiness. The problem with feeling numb is that you block out any real feeling at all. In the past couple of weeks I have finally been able to feel REAL joy again…the joy I had unintentionally suppressed for months. It has felt wonderful to feel joy again! Unfortunately a greater realization of the anguish I have has come seeping back in and I find myself wanting my brain to block out the pain again. We recently added a 5th anti-epileptic med to Nami’s mixture and now he is having more trouble breathing as he seizes. He’s had a few seizures where I held him as he gargled for breath during a 2 minute seizure. He is still having well over 50 seizures a day. I don’t even know how to count the seizures anymore. I wonder if I should even count the less severe seizures or only the severe ones. If I only counted the scarier ones it would be about 20-40 a day. If I counted ALL the seizures it’s probably well over 100 each day. Nami slept well for 2 days after adding the new medication. Then he began waking up at 4 am again, not to return to sleep. He often only sleeps a few sporadic hours each night. This has sent me desiring that meteor to strike again.

As if enduring a life with epilepsy wasn’t enough, the sad reality is that epilepsy is only ONE facet of Nami’s disease. There is so much more that we have to constantly deal with in TSC. What I have recently realized is that I cannot survive without feeling joy. The problem is that moments of joy are not enough to off-set the moments of pain so I’m not sure how to balance my feelings. I need to constantly reevaluate our circumstances and figure out how to get through each one. This takes a lot of work. I am learning that I need to go through this sometimes excruciating work so that I CAN feel the joy. I am happy about the bits of joy I have been able to feel again. I had forgotten they existed. Thank you family! I have enjoyed being able to feel again, yet this week I somehow often wished the pain I felt was numbed again. I have to figure out how to balance the pain that comes along with allowing myself to feel because I know that I really need to be able to feel the joy. In order to help myself, I have taken time tonight to record some of the things bring me great joy:

  • Believe it or not, I love teaching, especially anthropology (sorry sociology…you’re a great subject but just not holistic enough for my taste. =) I love the journey I’m taken on each day in each class. I love my students who are such good people.
  • I LOVE to hear about my friends and family’s lives. PLEASE don’t stop sharing them with me. Many people have made statements such as, “I shouldn’t be complaining to you. You have so much more to deal with than me.” I don’t want people to feel like they can’t share their lives with me. PLEASE share your lives with me. I NEED it. 
  • This little guy makes me laugh more than anyone else. Today he and Nami were up on the counter, playing in the kitchen sink. When I walked into the room and looked at them he scrambled off the counter, onto a chair, put Salesi’s ear bud in his ear, looked forward (away from me) and acted like he had been there the entire time. Hmm, does he really think he just tricked me?:
  • I am impressed with any and all progress made by this little guy. He has recently started to string two words together more often. It seems like I hear him say a new word almost every day. I love it, even if he doesn’t use it in the correct context or never says it again:
  • I have enjoyed going on two dates with my husband over the last couple of weeks. It is going to be fun to learn to laugh together again as with the help of my family we have scheduled in weekly dates to our lives:
  • I would not be alive today if it weren’t for these guys. I love spending time with any and/or all of them. I cannot even begin to recount the service they have rendered us. I do not have words to express the joy they bring me:

There have been multiple times that I have felt tempted to revert back to numbness since I started allowing myself to feel happiness again. Throughout my life I have often heard the saying, “There is opposition in all things.” This saying doesn’t seem to apply in the way I expected it to for me. I guess I expected that the amount of great pain I feel would be counteracted equally with great happiness. Instead, most of my days are filled with stress and frustration, and I only have momentary glimpses of happiness. I’m still trying to figure out how to negotiate this disparity in my brain. Does this saying mean those glimpses of joy will be so much greater than they would have been had I not felt such extreme pain? I’m not sure. I do hope that one day I will have a greater understanding of life and find myself better fit to handle it. In the meantime I will continue to strive to feel joy and happiness amidst all the difficulty that TSC brings.


  1. Thanks Annaka for this post. I too seem to numb myself in ways and this is a great reflection on how I can make improvements in my life. I went to a baptisms for Jordan's friend this weekend. He was born with no legs or arms. At his baptism someone giving a talk expressed what a glorious resurrection Jordan's friend will have. I couldn't help but think it will be such a wonderful resurrection for Nami as well.

  2. Woot Woot! Another great post from Annie. I think you are strikingly beautiful in that picture with Drew in the bottom left corner. Also I think if you want an instadose of happiness watch the home video of you and Lauren dancing together. We watched it last night and about died. LOVE YOU!


  3. Thank you for sharing your life with me. I am scared to see this home video you speak of, Daniel.


  4. Thanks for inspiring me to self-evaluate and remember what I am happy for too. AND....Lauren.....BEST.DANCE.EVER. I think you and Annie can for sure perform it again.

  5. You all know the one, "Nice day isn't it?!" Ring any bells? I love numb Annie, but I really love non-numb Annie! So glad you're feeling some happiness.


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